You probably don't remember me, but I will remember you for a while. You were waiting at the bottom of the stairs while your daughter made her way slowly downward. You rolled your eyes, gave a heave of desperation, and looked my way. There I was, a quick answer to "how do I get her to listen?" ​I realize you probably didn't think twice about what you said and simply moved on with your day. I realize we as parents all say flippant things to our kids when we're in a rush. Maybe you were stressed or in a hurry or just tired of waiting. Maybe you thought I would find it amusing and share in a friendly smile and agree with you, tell her you're right. However, you should know that I had a long discussion with MY kids about how your words made me feel.

"Stop that, or you're going to end up with bandages on your legs like that poor lady!" 

To be honest, I didn't quite know what to say, so I just awkwardly nodded and hurried up out the door. My family waited for me in the car, kids screeching out the window about how my husband had drenched them with water at the playground. As I settled into my seat, a thought occurred to me: I am not some poor lady!

I have a genetic connective tissue disorder called Ehlers Danlos Syndrome. My particular type of EDS causes severe joint laxity, which means my ligaments don't hold my joints together as well as yours. You've probably never dislocated a shoulder or an ankle before, nor have you had to have physical therapists painfully push 19 vertebrae back into place because you fell down one day, or catch you as you lose the ability to stand due. You probably haven't lost the ability to move your body or speak because of seizures. I'm glad you haven't...it's incredibly painful and terrifying. 

You see, without strong muscles, my joints depend on defective ligaments and end up slipping out of place. If you, like me, also had tethered cord syndrome, you would have lost some capacity for your muscles to even receive signal from the brain, making it even harder to keep everything in place. I constantly feel like I'm falling apart. Thank goodness I have an incredible team of physical therapists who put me back together every week, teach me exercises that I can do to slowly and carefully strengthen different muscle groups, allowing me to stay more stable and be more active. Thanks to one very knowledgable physical therapist, I connected with a surgeon who detethered my spinal cord and restored my ability to exercise effectively again. With exercise, for me, comes hope.

Unfortunately, while I build those muscles back up, I need some help. You didn't see my shoulders, but I have "bandages" there too. My physical therapist uses a strong tape to hold major joints in place, like those you see on my knees; the tape you referred to when you told your daughter to stop hopping down the stairs; the tape that made you refer to me as "that poor lady" without even asking me for my name. 

My name is Kelsey, and I am NOT some poor lady. I am strong, resilient, determined, loved, and fighting every day to live my life to the greatest extent possible. A few months ago, I feared I would lose the ability to walk. Today, I'm attending local fairs and watching my kids learn to roller blade. I'm slowly gaining back my confidence and relying on amazing medical professionals who can help me get my life back. I hope you read this someday and remember that those of us who require braces, or wheelchairs, or tape to enjoy life aren't to be pitied. We might just have some really inspirational stories to share with your daughter. Please ask.

It's a cliché. I speak in clichés more now than in my collective decades on this planet. I've felt a strange love of life, hope for the future, a crescendo of emotion as I sat in a wheelchair and watched my husband and three children at the aquarium. Years of teaching and caring for other people's children presented me with a myriad of delightful experiences. Seeing the wonder in a child's eyes is truly an ordinary thing that makes life extraordinary.

My husband and I brought my three children home over the course of four months last year. Three siblings brought into our lives through foster care adoption. It was messy and awkward, breathtaking and uniquely us. I look back on those first few moments together and think how much I used my teacher voice! It wasn't until a nanny at the playground commented, "You must be a mom. I can tell by how relaxed you are with them," that I thought maybe I had grown into my parental role. 

And then things got harder. 

This time, my pelvic pain wasn't the problem. It started with severe headaches that had increased after taking fertility drugs in 2014, then periods of aphasia that became increasingly common. One afternoon, I sat in my physical therapist's office and couldn't move my body. My eyes widened, tears appeared and rolled down my cheeks, and all I could do was utter the word, "Weird." 

I couldn't move. The room began to spin and I lost all sense of my body. I collapsed into several arms and began to shake. 

Life is messy. 

​I was eventually diagnosed with a condition called tethered cord syndrome. Tethered cord is a rare condition where the spinal cord becomes abnormally attached to the base of the spine, in my case by a ligament. It should float through the spinal fluid as you move your spine, floating up and down as needed. Mine couldn’t, so it pulled and stretched, tugging my brain stem into my spinal column. This caused a wide range of neurological symptoms and pain.  
 
My son moved in the week after I started donning a neck brace, and I had invasive spinal cord surgery a week before my youngest daughter's fourth birthday. Our first Thanksgiving and Christmas were marred by my disease, and this time I didn't really understand what was happening to me. I have never been so terrified. I longed for the days when I was healthy enough to sew, my one therapeutic activity and source of calm. The worst part was that I began to criticize and blame myself. What business did I have being a mom if I couldn’t run and jump and wrestle with my kids? 

The darkest moment was when my neurosurgeon checked my legs for a good five minutes, then nodded somberly and admitted that I was showing signs of spinal cord signal loss. I couldn't afford to postpone surgery. Through it all, however, I've learned a few things that I will carry into the future. 

Never take people for granted. My husband, my children, my family, my friends, my doctors, my community...I'm a critical person at times. Having lived through this experience, I am humbled and striving every day to step back, observe, react with patience, and thank often. 

Every part of my body is connected. 
As my tethered cord syndrome worsened, I lost control of my bladder. I stopped feeling when my bladder was full. I also lost feeling of pain in my pelvis. My endometriosis/adenomyosis pain diminished. My period shortened to just two days of medium to light flow per month. I bounced between feelings of relief, confusion, and worry that something was seriously wrong with me. In the four months since my spinal cord surgery, my period has returned in full force. I’m back to four days of deep cramping, heavy bleeding, and clotting. My disease didn’t get better. Like the rest of the muscles in my lower body, my uterus is getting stronger again, and I can feel it.
 
I deserve to be a parent.
I can be extremely self critical. Unfortunately, it wasn’t just me. There were others who judged me, made me feel like less of a parent. Is it really important that I play basketball with my son, or can I show him the same kind of love and attention when I teach him how to sew a felt toy together? What do children really need? Food, shelter, security, love. I can give all of that, and so much more. I can't throw my children around in the pool, but I can sit in my lawn chair, laughing and cheering as they speed down the slide 'n slide in our backyard. I can play board games and read to them every night. My children understand that people come in all different shapes, sizes, and abilities. My children are learning compassion, understanding, patience, and the beauty of diversity. They know that just because their mom can’t walk for three hours doesn’t mean she can’t enjoy a museum. She needs a wheelchair, that’s all. That's a lesson many people won't appreciate until someone in their life is touched by disability or age. Most of all, I’m there. I’ve been with them every single day since they moved in. I’m there in the middle of the night when they have nightmares, and there to see them get off the bus. They call me a picture ninja because I take photographs of them doing everything. They know they are loved and cared for. That’s really all that matters.
 
Life is a miracle. A very messy miracle.
Before my surgery, my life was not much fun. I couldn’t do most of the things I enjoy. I couldn’t volunteer at my children’s schools, couldn’t sew, couldn’t write, and was fairly irritable. I suffered seizures and intense headaches. Because of my Ehlers Danlos Syndrome, a genetic connective tissue disorder, I frequently partially dislocate (sublux) or completely dislocate most joints in my body. As I lost muscle control, I subluxed more often, causing widespread joint pain. After my surgery, I am able to slowly get back to the things I enjoy. Each step forward is a marvel after fearing the loss of my ability to walk. I’ve been seizure-free since my surgery. I no longer have intense headaches. My pain is slowly, very slowly, improving. I still have to be careful about my body mechanics and make sure I get enough rest, but even so…I’m enjoying life again.
 
This summer, my husband and I took my children to the aquarium. My husband pushed me in a wheelchair because I couldn’t tolerate walking for more than 15 minutes at a time. I sat in my wheelchair, several feet from where my children beamed, petting rays and sharks.
 
“Mommy, Mommy!! Look! It’s so slippery! Look, it’s coming over to me!”

I sat back. I’d been there before. The aquarium wasn’t new to me. I had been at least 10 times. I thought to myself, let my kids enjoy it, and I’ll just enjoy them. But then I thought, why not? Slowly rising from my chair, I carefully dipped my hands into the pool. As I watched the rays and sharks glide gently through the water and skim my hands with their backs, a sudden rush of emotion overcame me. Tears welled up in my eyes.
 
Life is beautiful. Life is a gift. I had never felt as grateful for my life as I did at that moment. For three years I suffered infertility, chronic pain, and an ache for motherhood. Once I became a mother, life wasn’t perfect. It was hard. Life kept pounding away. My pain nearly swallowed me whole, but I didn’t give up. I found doctors who could help me, who were knowledgeable in my rare disease, who didn’t give up on me, who pushed me to undergo major surgery and keep fighting. The fight I had battled with endometriosis gave me the tools to know that there were answers out there, and I had to find them.
 
Life isn’t perfect. We all have strife and pain and heartache. But if we find support and moments of joy and hope, we might just make it through. We might just find reasons to keep fighting. We might just find hope.  

My first period arrived when I was 13 years old. I thought I was going to be sick...the awful, stomach flu kind of sick. I ran to the bathroom and there was blood on my underwear. It was exciting, scary, and not what I had expected. I'd been waiting to "be a woman" since I first heard about periods when I was nine years old, and faked getting mine with my other friends who were also learning about puberty. I wasn't prepared for the honest, inconvenient, messy reality of "flowering" into womanhood (HA!). For me, it was more like something out of the Walking Dead...a slow turn into something unrecognizable from my former self. 

My family took notice. By some miracle, my uterus waited until summer vacation to turn on its green light and begin to activate, so the days upon days I spent lying on the couch, either at home or at my grandparent's house, were allowed. Unfortunately, it was also perceived as laziness and listlessness, rather than as crippling fatigue. I was told to get up, go do something, given a list of chores to keep me busy...my family just wanted to see their little girl active again. At 12 years old, I spent my summer non-stop rollerblading, riding my bicycle, climbing trees, running around the neighborhood with other kids, wearing a fake nose ring and dreaming of being the mature adult I thought I was. At 13, there were days I could barely peel myself off the couch. I'm sure my family knew something was wrong...they just didn't know what it was. I sure didn't.

Years of sexual education certainly didn't teach me anything about Endometriosis. We were taught about ovulation, fertilization, sexual intercourse, STDs, but nowhere in those many uncomfortable classroom discussions was there a mention of what it feels like when your body isn't functioning the way it should. Endometriosis occurs in 1 in 10 women and girls worldwide, regardless of class, color, or creed. Research suggests that Endometriosis is in our bodies from birth, and activates around the time when a girl first begins to menstruate, deepening and worsening over time. If someone, anyone, had told me that the fatigue, pain, and excessive bleeding were not normal, I could have spoken to my mother or my doctor and perhaps gotten help early. But I didn't.

I developed my first cyst at the age of 20. Seven years after my symptoms first began, I was rushed to the emergency room after collapsing on the bathroom floor next to a trash can of my own vomit, pounding the floor in pain and unable to stand. I thought I was going to die. 

The emergency room doctors diagnosed me with an ovarian cyst and kidney stones. I was given a strainer and told to drink plenty of water. Nothing was done about my cyst. "They're normal. Most women get them at some time in their life." 

Years later, I found out that cyst had been complex. For those not familiar with the many types of cysts, functional cysts, or simple cysts, are formed each month with ovulation. This small cyst houses the egg that will be released for fertilization. That cyst will become a luteal cyst, a normal part of a woman's cycle and an essential source of progesterone that will nourish the potential embryo, should conception occur. These cysts are normal and essential for a healthy pregnancy. Hemorrhagic cysts typically result from simple cysts, are filled with blood from the vascular tissue within the ovary, and can cause pain. They typically resolve on their own. 

Complex cysts, on the other hand, are not a normal part of ovulation. They typically have thicker, irregular walls, suggesting solid tissues, multiple chambers, can grow over time, and may require surgical removal. These cysts may be benign, associated with Endometriosis (endometrioma), dermoid cyst, or malignancy. They typically require monitoring by ultrasound or MRI for changes to help determine the type of cyst, risk factors, and the appropriate treatment. Endometriomas in particular are associated with invasive Endometriosis, suggesting deep disease of stage III and IV, both associated with decreased chances of conceiving naturally.

Following my first cyst, I was not monitored. I returned to college and developed many more cysts, some simple, some hemorrhagic, and some complex. Most ruptured, and I struggled to keep up with my heavy course load while battling nausea, fatigue, and severe pain. What really boils my blood now, knowing what I do about Endometriosis, is that no one, not once, said, "Hey...this isn't actually normal to have this much pain with ovulation. Perhaps there's something more going on here." Instead, I was told this was NORMAL. 

It's not. That amount of pain is NEVER normal. 

At 22, I landed in the emergency room with another complex cyst. Finally someone said the word Endometriosis. I was given a two page description of Endometriosis and told that surgery was not an option at my age. I was too young. Five years later, I came off of hormonal therapy, frustrated by severe side effects, and developed a 7cm complex ovarian cyst. This time it was treated differently. My gynecologist skirted around the word "cancer," and sent me to a diagnostic ultrasound facility. The radiologist could not rule out cancer either. Surgery was scheduled a week later. 

It took a cancer scare 14 years after onset of symptoms to finally get an official laparoscopic diagnosis of Endometriosis. 

As I sit in my office, recalling these events, my eyes fill with tears of anger, regret, and disappointment. I have met countless women with stories like mine. My story is not the exception. It is the norm. And it is NOT OK. 

Endometriosis is not a benign disease. Left unchecked, it has the potential to cause real damage. 17 years of living with this disease, my body is unrecognizable compared to that happy, joyful, energetic 12 year old girl who longed to be a grown up and have children of her own. I've made my peace with the fact that I will not birth my children, and I am so excited and anxious to adopt. What I can't make peace with is the severe delay in diagnosis that is considered NORMAL. I can't wrap my head around the fact that a disease that can destroy a young woman's fertility and quality of life is left inside her body to wreak havoc. Ovarian endometriomas suggest invasive disease, the type that has potential to decrease her chances of conceiving naturally. 

It is essential that we educate girls and young women about what is normal and what is not normal in respect to their periods. In order to empower them to take charge of their health, we need to provide them with information. They need to know that severe pain with periods and with ovulation is not a normal part of being a woman, that nausea, fatigue, and crippling pain are signs of Endometriosis. We also need to teach them that by diagnosing and effectively treating the disease early, they can have a chance to live happy, healthy lives. 

Let's not allow the next generation to become invisible sufferers of Endometriosis. Let's change things for the better.

It's Endometriosis Awareness Month, and everyone is talking! In my last blog post, I wrote about my strong belief that as we spread awareness, we need to keep in mind what type of information we are conveying. It is vital that we share accurate, up-to-date information because there are so many myths that are widely believed as truths. The biggest myth, and I believe the most dangerous myth, is that if symptoms are relieved by a treatment option, such as diet change, hormonal suppression, or even during a pregnancy, the endometriosis must be gone or "in remission." 

This is something that I was led to believe by doctors for years, or at least led to believe that I was keeping my Endometriosis from growing and progressing. I stayed in medical menopause for almost five years, enduring horrible symptoms like fatigue, excessive weight gain, depression, and eventually bone loss because I was told that it would keep my disease from getting worse. I was even told that staying in medical menopause would preserve my fertility. 

All of this was false. Efforts to reduce inflammation, suppress estrogen production, and "starve" the Endometriosis can mask or relieve symptoms. I believed that my disease was being controlled because I wasn't having severe pain, and my ovaries weren't producing cysts. At one point, I joined an online support group because the side effects of my suppression were starting to overwhelm me. I hoped that my Endo Sisters might help me find a way to relieve the side effects, or at least to deal with the emotional aspects of being in menopause in my twenties! As I read through the posts by patients just like me, I began to think that all of these women were so much worse off than I was. They were having surgeries left and right, struggling with debilitating pain, some were being pushed to the breaking point by their disease...and I felt sorry for them. I tried to tell them how wonderful it was that my disease wasn't that bad. One woman reached out to me (and I consider her an angel now!) to explain to me about excision surgery...and I promptly left the group. I didn't need that! I was doing great! My disease was under control and when I was ready, I would have my babies and my hormones would "reset" and my Endometriosis would be gone!

Poor, naive 24 year old Kelsey. 

As it turned out, when I finally couldn't stand the hot flashes, night sweats, and lack of energy, and came off of hormonal suppression, the pain was mindblowing! I convinced myself that I had just forgotten how painful it was to have a period. It's hard to keep telling yourself that when new symptoms begin, like the stinging, pulling pain I had with every urination during my period, and the stabbing rectal pain during bowel movements, not to mention the weekly, severe bouts of diarrhea that not only kept me in my bathroom for 6 hours at a time, but also caused some of the worst pain and fainting spells I had ever had. 

It became clear that my disease had not been controlled. I soon found out that my fertility most certainly was NOT preserved (I couldn't even ovulate on my own once I started trying to conceive).  Everything I had been told since I had heard the word Endometriosis had turned out to be a myth. 

Most medical treatment options are based on the notion that Endometriosis is just transplanted endometrium, cells that escaped the uterus and implanted elsewhere. Extensive research, however, has proven that Endometriosis is not the same as endometrium. It is pathologically and histologically different. Endometriosis has the ability to produce its own estrogen, so even when we are on medical treatments, which attempt to cut off the fuel source that feeds endometriosis, it can continue to grow and progress. The sad part is, we may not even be aware that it is happening. Like 24 year old me, many patients and even some doctors believe that their Endometriosis is being controlled or even cured because their symptoms have stopped. I was told by one fertility specialist that he had "cured" many of his patients by helping them get pregnant (by the way, if a doctor ever claims this...run!). 

But why is it so important to bust this myth? If the patient doesn't have symptoms, who cares?! She is able to get back to her life, and perhaps she doesn't have many side effects. Perhaps she has found a way to control her disease that works for her. That's the goal in this life with Endometriosis; to break free from the chains it has placed upon us and continue to live happy, productive lives. 

It is important  because laparoscopic surgery and pathological analysis is the only way to diagnose Endometriosis. Endometriosis cannot be diagnosed based on a patient's response to hormonal suppression. I'm passionate about this because I know what it is like to take one medication after another, to be told it is "too early" for surgery, and meanwhile live a life in which I can't even stand to be in my own skin. I know what it is like to be on the other side of that scenario, when the treatment either stops working or I choose to stop taking it. Endometriosis fell back upon me like a ton of bricks, but it was 100 times worse than it had been before. My disease progressed while my symptoms were under control. By the time I had surgical intervention, my Endometriosis had been left to grow inside my body for 14 years. The damage was done. I've come out on the other side, I've had excision surgery, but chronic adhesions, multiple surgeries, and damaged or removed organs continue to leave their mark on my life, and my health record. 

Women with Endometriosis are being seen as a billion dollar industry, a market to be tapped. Keeping our disease inside our bodies, instead of cutting it out root to tip and sending it off to be analyzed by pathology ensures that we will continue to require treatments, many of which are exceptionally expensive and can cause long term damage to our bodies. There are people out there claiming to have a magic cure, and women who are desperate to try anything, only to find they've spent money on false hope. There are even people out there who are charging exorbitant amounts of money to teach us to love our Endometriosis away, to reconnect with our "womanhood" and unload our emotional baggage that is "manifesting" as pain in our pelvises. 


Comprehensive care, provided by licensed professionals and coordinated with an expertly trained Endometriosis specialist, can improve symptoms, quality of life, and our ability to manage life with a chronic illness. Any technique that can legitimately improve our lives in worth trying, and every body is different. Each program should be individually tailored to the patient.  The key to remember is that symptom management does not equal a cure for Endometriosis. Through comprehensive care, including a team of specialists in excision surgery, nutrition, physical therapy, and more, we can strive for higher quality of life and healing. The first step is dispelling myths and focusing on effective treatment options. 

As we move into our second year as an organization, the excitement and hope that I felt about spreading Endometriosis Awareness has shifted. When I created Ask Me About My Endo, I had a lot of big ideas and a whole lot of momentum. I wanted to teach, I wanted to organize huge campaigns and concerts, I wanted to change the world! A year later, life, as they say, has become complicated. 

As I plan what Ask Me About My Endo is going to do this year, I have simpler goals. I want to finish a video I started last summer documenting my out-of-state excision surgery. I want to make more Rubys to send out to women around the world who are in need of comfort and support. I want to put part of the proceeds toward women seeking surgery. And I want to continue getting people to talk about Endometriosis. That, of course, was our first and most important goal.

As a community, we've made some amazing strides. It seems as though almost everyone I mention Endometriosis to has at least some semblance of what it is...a painful disease that has something to do with your period. Just this week, a video surfaced from Buzzfeed of all places. With over 3 milion Youtube subscribers, this video reached more people than I think I could ever possibly dream of. My little organization is run out of my home, in my down time, when I feel healthy enough to work on it. Today, I am in bed, on the first day of my period, having yet to take any form of pain medication, over-the-counter or prescription, but I know that my adenomyosis will not let me lead the day I would like to. The disease within the wall of my uterus can only be removed with a hysterectomy, so I continue to live with this pain until that day comes (hopefully soon). However, I'm sitting upright. I can move freely side to side. I am not vomiting. It is possible that I might feel faint if I have a lot of bleeding, but for the most part, this is a vast improvement from where I was two and a half years ago, before I had excision surgery. 

When I shared the Buzzfeed video to our Facebook page, I commented that the girl in the video needed to learn about excision surgery. In the video, she claimed that surgery after surgery, the pain kept coming back. That Endometriosis will always come back (if you're having ablation surgery, the most common type, it probably will). She also explained Endometriosis as being a disease where the lining of the uterus somehow travels outside the uterus and implants. 

Unfortunately, this is not entirely accurate. Current research suggests that Endometriosis is laid down during embryonic development. It is already there when we are born and it is just a matter of when it will mature and start causing pain. There is also research suggesting a link to the use of pesticides, ironically conducted in the region in which I grew up. There is no scientific evidence that Endometriosis is caused by retrograde menstruation, the most popular and outdated theory known as Sampson's Theory, wherein they think the endometrium has no place to go so it travels outside the Fallopian tubes. This is what most doctors are taught in medical school, and is why it is so hard to get effective care. Myths such as that pregnancy can cure Endometriosis, that hormonal suppression (birth control, medical menopause) can halt disease growth or preserve fertility, or that Endometriosis cannot occur in girls and young women stop us from getting effective care. 

We are most likely born with this disease, and when our disease is left in our bodies, it grows deeper. It damages our organs. What's more, it destroys our lives. 

There are better treatment options out there. The most common types of treatments offered cannot remove the disease or prevent more growth. They can mask symptoms, they can buy us a few months of even years of pain relief before we are right back where we were before, or worse. I am a prime example. I spent 15 years living with this disease, five of which was in medical menopause, being told there was no hope. I could take pills, or injections, or get pregnant, but no one ever told me that there was something better. Meanwhile, my body was being damaged by a disease left unchecked.

My passion for sharing the hope of excision surgery is what drives my desire to spread awareness. If we keep talking about Endometriosis as a disease with no hope, as something we must merely deal with, we are not moving toward a cure. No cure currently exists. Yes, pain can still persist after excision surgery, typically from co-morbid conditions like interstitial cystitis, adenomyosis, pelvic floor dysfunction, adhesions, and neuropathic pain. Then, there is the case of true recurrence, which can happen in 5-20% of cases post-excision, depending on the skill of the surgeon. Does that mean that we ignore the amazing hope that excision surgery can give us? Do we dismiss surgery and just keep talking about Endometriosis in the same old way, as a condition we will never beat?

My answer is no. My life was changed by excision surgery. I was barely surviving living with 20 different areas of Endometriosis. Am I completely pain free today? Unfortunately, no. I continue to live with adenomyosis and a body that has had organs removed and is tied up with adhesions. But it is better. There is hope! My opinion may not be popular, and it is by no means an easy road with an easy fix. It is so easy to get discouraged when surgery doesn't magically erase the damage. I know...I've felt that. I battle every day the emotional pain that Endometriosis stole my youth and my ability to have children. But I won't let that get in the way of moving forward. 

Next month, March 2015, it's our time. Endometriosis Awareness month is a big time for us to use our voices and spread awareness about our disease, to fight for more effective care and hopefully, someday, a cure. I urge you to use your voice to spread the right kind of awareness. The kind that doesn't perpetuate the same old myths. Pregnancy is not a cure. Drugs do not prevent growth of disease. Better care is out there. It's time for us to fight for knowledge and access to better care, fight for getting Endometriosis its own medical specialty, coverage from insurance, educating new doctors and nurses in the truths about our disease so if they can't help us, they will know who can. 

I hope you will join me, and Ruby, next month for Rubys on Parade, and help get the word out that there is hope, and we are here to help you find it. 

2014 was a monumental year, both in the Endometriosis community and in my own life. Of course, the biggest, most life changing event this year was the founding of Ask Me About My Endo. When we began this journey, AMAME was nothing more than a t-shirt design and a few big ideas about how to make an impact in the Endometriosis community. Endometriosis had shaped so much about my life, and I didn't feel I had control over any of it. This year, I took control of my identity as an Endo Sister with not much more than a burning passion to share my story and make an impact on the next generation. As one of an estimated 176 million women affected by the disease worldwide, my ideas seemed at times too big and grand to achieve, and at others too small and simple to affect much change.  I had a lot of big ideas, many that were too much for me to achieve in such a busy year. Some continue to poke me as I fall asleep at night and remind me of everything I haven't accomplished because life gets in the way. I had big dreams about organizing a benefit concert, creating a music video campaign, writing a book, and getting into schools and sharing my story with teens, who I hoped to arm with information should they ever start their own path to a diagnosis. 

Many nights I've stayed awake for hours kicking myself for not sending an email or getting a sewing project finished. How can I make a difference if I get so little accomplished? All those projects floating in my mind that didn't come to fruition this year haunted me. That little voice in the back of my head whispered, "See...you can't do this. You can't make a difference. Look at all the things you didn't do this year." 

Then a stronger voice took over, saying "Look at everything we DID accomplish! This has been a crazy year, but look at everything we've done so far! Those projects don't have a deadline. Let's work on them next year!" 

• Since February of this year, we have gained 1663 followers from 45 (45!!) countries around the world on Facebook. I am so incredibly humbled by the opportunity to interact with such a thoughtful, supportive, diverse group of people 
• One of our Facebook posts reached 20,500 people! That's mind blowing!
• We held our first Flash Mob in Boston to help spread awareness about Endometriosis and invite others to join us at the Endo March 
• We had the privilege to travel to Washington, D.C. for the Endo March and meet some of the most inspiring women I have ever had the pleasure to know
• We were able to learn about the End to Endo project while in D.C., and participated in this game changing research (by the way, we also totally encourage you to participate too! Head over to www.endtoendo.com for more info) 
• Through our Cafe Press shop, we raised enough money to start this resource website, which gives us the chance to share our story and our mission for awareness and advocacy. The website continues to grow and change as we receive feedback from our fans
• We had a BLAST creating some really fun awareness photos featuring our mascot, Ruby the Endo Roo, and are stoked about our upcoming awareness campaign, Rubys on Parade, happening in Endometriosis Awareness Month, March 2015 (and yes, we got some weird stares from people as we took photos of Ruby in D.C., Walt Disney World, Chicago, and New Hampshire!)
• We handcrafted and shipped 19 Ruby the Endo Roos! (I am seriously stoked when I see photos of those Rubys out and about in the world, so keep them coming!!)
• We rebranded my Etsy shop with a new mission to donate a portion of every sale to women seeking advanced care with excision surgeons
• We created a line of heating pads specifically designed with women with chronic pelvic pain in mind, all handcrafted in our home
• Thanks to your support, we have donated nearly $100 to excision surgery fundraisers! That may not seem like a lot, but for the women trying to pay for their surgeries, every dollar counts.  We hope to double this in the coming year!

Most importantly, we have had the immense honor of meeting incredible women who are fighting every single day for awareness, compassion, effective treatment, and hopefully someday, a cure to this debilitating disease. I could never have imagined this time last year that I would have the opportunity to meet so many brave, kind people that make up our amazing community. Throughout the hardships, there is a passion for change that is impossible to ignore. There are so many women who continue to inspire me to be a better person and to strive for better outcomes for the next generation of women. There are so many of you out there who are making an impact in our future. For that, thank you. You are all rock stars! 

And finally, I want to thank my AMAZING husband for being my rock, my partner, and my inspiration. I could never have become who I am today without you. :)

Wishing each and every one of you a happy, healthy, and productive 2015! Let's change the world one baby step at a time!

Today is Thanksgiving. Growing up, I spent Thanksgiving at my great-grandmother's, packed into a small ranch house in my hometown, full to the brim with extended family arguing over politics, decorating the Christmas tree, and watching Willie Wonka and the Chocolate Factory in a tiny bedroom with my cousins. The evening usually involved lots of food, lots of pictures, but absolutely no shopping. Now, we still caught a few minutes of Willie Wonka on television while eating our Thanksgiving Eve dinner fresh from a neurology appointment.  My husband browsing the net to see what kind of crazy Black Friday deals are happening, and I'm posting to my Jamberry Independent Consultant page with the Black Friday deals going on within the Jamberry universe. That's how I'm earning a little income while I am home with whatever-is-happening-to-my-feet that's making it difficult to walk. With everything that has happened this year, I've missed 11 weeks of work, and counting. There are serious benefits to working from my couch. 

"Wow, this store is guaranteeing a $200 television to anyone who is in line at 6pm on Thanksgiving!" my husband exclaims. "Do you think we'll be done with dinner by then? That's an amazing deal."

It is an amazing deal. Stores these days realize the amount of money that is up for grabs for anyone who is offering rock bottom prices for fancy electronics and other big ticket items. I mean, a department store is advertising a deal on an XBox One! We've all seen the insane footage of people trampling one another to make sure THEY GET THAT DEAL. I've participated a few times in my adult life, especially when I was in need of a particular item and wanted to spend the least amount of money possible. Thanksgiving with my in-laws typically involves peeking at the Black Friday flyers during dessert, and two years ago, we ran into traffic heading home from dinner because we lived in close proximity to a mall. Somehow, though, I just can't stomach the early evening shopping on Thanksgiving. Whatever happened to the good ol' turkey nap? Time with family? Savoring the evening and just enjoying great food and company?

Then there are the retail employees. I doubt that employees are arriving at 6pm for these sales. More likely, there are cashiers and people stocking inventory early Thanksgiving morning, and I'm positive there will be overnight shifts as the push into the biggest retail weekend of the year begins. There's no way of stopping this money-making train when incredible deals are drawing customers to line up around the block. While I'm not going to make any judgments about whether or not anyone participates (including my husband), there is something we can do to achieve at least a little bit of balance in all this chaos. 

I've decided to become a social media ambassador for #GivingTuesday, a movement to bring back the spirit of giving that makes this time of year so special. Here at Ask Me About My Endo, we have a strong belief in giving back to people in our Endometriosis community, and today I would like to encourage you to take part in #GivingTuesday with me. Right up above, we have a tab called Sponsor a Surgery. This is a page where we list women who are seeking or who have undergone excision surgery for Endometriosis. Excision surgery is a highly effective way of removing all of the disease from the body using wide margins and sending the tissue to pathology. As opposed to the most common surgical technique employed during a laparoscopic surgery for Endometriosis (ablation - burning the surface of the disease), the recurrence rate for excision is low. Women who have this surgery have a far lower chance of their pain from Endometriosis returning because ALL of the disease has been removed from root to tip. There are only a handful of surgeons in the United States who perform this surgery effectively, so many women have to travel for quality care. Some insurance companies deny coverage for this surgery, or the surgeon is out-of-network, so the cost of this surgery is higher than the less effective types of treatment. The financial burden is high, and we at Ask Me About My Endo are on a mission to help in whatever way we can. We host links to fundraisers for some of these women, and we donate sales from our Etsy shop to these fundraisers. Ruby the Endo Roo, our mascot, is sold in our Etsy shop, handcrafted by yours truly, and $10 from each sale is donated directly to the fundraisers. 

This coming Tuesday, I'm asking you to help us make a difference. If you are able, please consider making a donation to an Endometriosis cause. There are non-profit organizations that are dedicated to further Endometriosis research, providing support, and advocating for awareness and high quality care for women with Endometriosis. Many of these organizations have made a huge difference in my life, and they have most certainly made a difference in our community. The Endometriosis Research Center, the World Endometriosis Research Foundation, and the women listed on our website are some worthy causes that we would love to encourage you to consider. Whether or not you're able to contribute, I hope you will join me in being a social media ambassador and help spread the word about donating to charity on Tuesday, December 2nd, 2014. 

Happy Thanksgiving everyone. I hope you will join me in promoting the spirit of giving this holiday season. 

On this day of thanks, here is a list of things I'm thankful for:

• my diagnosis, for putting a name to my symptoms and giving me the power to research my disease and advocate for better care
• my health team, for helping me navigate a complicated jumble of symptoms
• my excision surgeon, for listening, teaching, empathizing, effectively treating, and continuing care
• my Endo Sisters, for supporting me and helping me learn new ways of coping
• my family, for believing me when I said I was sick and understanding when I'm not well
• my husband, for walking with me through my darkest days and caring for me even when it's not easy 
• my friends, the ones who have stuck around, for picking me up when I'm feeling down, and excusing cancelled plans because you know I'd rather be with you than sick in bed
• my community, for all the mentors, researchers, and warriors fighting for a better tomorrow for women like me

...and finally, for you, for sharing, collaborating, following, and supporting. 

Thank you.

"I would do anything to have a baby! It's worth the pain." 

As I read these words, written by a fellow Endo Sister, I felt guilty and hurt. Here I was, expressing my feelings and experiences regarding infertility, and suddenly what I was willing to do wasn't good enough. 

Some might say I didn't try hard enough. Some may say I didn't give it enough time. In theory, I suppose we are all supposed to leave the door wide open, and subject ourselves to the emotional and physical assault of fighting against our bodies to try to have a baby. But even world class fighters know when to tap out. 

It's a serious injustice in our society that trying to have a baby plays such a huge role in who we are as individuals. I literally turn into one of those cartoon characters every time I read about how giving birth is the ultimate expression of womanhood. I suppose in a society where we sexualize women for entertainment and have to justify ourselves in every corner of our lives, where the major milestones revolve around sexual maturity (our first periods, losing our virginity, our first child, "the change"), we never really stand a chance. For those of us who most likely will never conceive, it feels like we are stuck in some kind of sexual limbo. Our bodies will never be changed by giving life. Any stretch marks on my body are the mark of my own making: puberty, the freshman 15, or in my case, weight gain brought on by medically induced menopause.

For years, I believed that I was preserving my fertility by not having my period. Hormonal suppression destroyed both my body and my spirit, but once I went off the progesterone-only pills, my cycle returned. I ovulated. I had extremely painful periods. I expected to be able to get pregnant, and why not? I was/am young, a mere 29 years old at the moment, but soon to be 30. I was once told by a gynecologist when I was first diagnosed with endometriosis that 30 was the magic number. A screwed up Cinderella story, get pregnant by 30 or risk never getting pregnant at all! 

Two years ago, my husband and I began our journey to start a family. Frantic at first, driven by uneducated doctors who believed getting pregnant would treat my disease. Two surgeries, a miscarriage, and likely two more very early losses later, we made the unbelievable decision to stop fighting my body. While on a weekend getaway celebrating two years of marriage, and two years trying for a child, I said no more. No more blood tests. No more drugs. No more anxious "two week wait." I'm tapping out. 

It's not that I'm giving into defeat, beaten down by life, or tired of heartbreak. My body is done. This year alone, I've had three surgeries for various reasons, but it's more than just feeling sick and tired. I actually feel pretty good, in comparison to where I was two years ago. What is really driving this decision is both what my body has been through, and what might await it if I don't stop.

Let me tell you a little about where my body is today. I've had two excision surgeries for endometriosis, and plan to have one more to remove my uterus for suspected adenomyosis, a disease which causes endometrial-like tissue to grow inside the uterine wall, causing severe cramping, bleeding, anemia, fatigue, and leg and back pain. It is also associated with several pregnancy complications, including placental abruption and early labor. I have bone loss in my spine from taking drugs I was told would "treat" my disease, but which just masked symptoms as my disease continued to grow. I have an extra 40lbs I have been unable to lose since my medical menopause. My joints hurt ever since I took one round of a fertility drug this cycle. I have 12 scars from surgeries that gave me back my quality of life, and in one case, saved my life. I have some fatigue and brain fog from who knows which cause, whether it be my disease directly or long term side effects from suppression drugs. I have a couple kidney diseases, countless aches and pains, headaches, allergies, all somewhat secondary and mostly managed well. And lastly, I have hormonal imbalances. 

We've done a lot of work over the past year with our NaPro doctors to supplement and regulate my hormone imbalances. When we started, my estradiol was too low at ovulation and too high after. My progesterone was low, but close enough to normal that we actually got pregnant! After we miscarried, I continued supplementing my progesterone while we avoided conceiving until my surgery to check for blockages in my Fallopian tubes, since it would be risking life threatening ectopic pregnancy. The day I went into surgery, I found out my estradiol was perfect! Our efforts were successful, and we were given the green light to try again when I woke up with two healthy Fallopian tubes. 

We began again with fresh hope, on the road to our "rainbow baby," and it wasn't long before my period was late again. Yet, something wasn't right. I saw a shadow on my pregnancy test, just enough to get my hopes up, but the next was stark white. For days, I peed on every test strip I had in my house, but that shadow never returned. Although four days late, my period eventually showed. 

Bloodwork came back showing my progesterone was just 6.5, dangerously below the recommended 20 for a healthy pregnancy. Lower than my previous cycle, which was lower than the one before that, and the one before that. This cycle, I went against my gut feeling and took a fertility drug meant to improve egg quality and support my luteal phase by raising my progesterone. Despite that drug, and bioidentical vaginal suppositories, I opened my lab results the second day of our anniversary vacation to find my progesterone was at an all time low...and so was my estradiol. Now, both results were abnormally low, but this time, I also had severe joint pain that made it nearly impossible to use my right hand and arm for weeks. It was all for naught.

I know many people will question why I didn't try IVF. Our decision was complex, a mixture of contraindications and gut feelings. Risk of ovarian torsion and overstimulation, risk of going under anesthesia for a fourth time in a year, a deep, gut wrenching instinct that it just wasn't the right choice for us, and something else. 


A feeling of being called to adopt. 

I've always wanted to be a mother. My husband asked me years ago, while I sat in tears discussing why I wanted so badly to try for a baby, "What about your career? Don't you want to work on that first?" No...I'd give up my career in a heartbeat to be a mom. I went to college and received my masters degree because everyone has a place in society, and I loved working with children, but my heart's true desire was to have children of my own. 

It is devastating to not have that wish filled by a biological child. I'll never feel a kick inside my body, or know what it's like to be utterly uncomfortable and exhausted at the same time as complete joy and fulfillment. I'll never push through 36 hours of labor and struggle to guide my child toward my breast for the first time, desperate that she latch on and learn to nurse. I'll never sit in the middle of my friends and family, tying ribbons around my belly and opening precious little baby socks and diaper cakes. I do so very much want those things. But there's something I want even more.

A healthy body. One that is able to care for my children, whom I will have someday. Born in my heart, carried home perhaps at six months or two years old, cherished and nurtured and loved. I will raise my children with the knowledge that I put their needs above my own desires. They need a mom, whole and happy, and not beaten down by life and medical procedures. Not pushed to the brink by miscarriage after miscarriage because the pregnancies just wouldn't stick. 

When you go through parenting preparation courses, you discuss legal risk and the potential emotional roller coaster of adoption. Building a family when you have infertility isn't easy, no matter how you end up doing it. I know one thing, though. 

This is the risk I AM willing to take. 

I'm not willing to risk more bone loss. I'm not willing to risk the progression of my disease by increasing my estradiol via supplementation. I'm not willing to risk the breaking of my heart when I tried so hard to achieve a pregnancy only to lose it again. I'm not willing to push myself past what my spirit can endure. I know in my heart that something is telling me it's time to let go. My body cannot do it, not right now. Not after what it has been through. My body needs rest. My body needs pampering. My body needs me to focus on something outside of itself. 

My body needs hope. My spirit needs hope. And somewhere, there is a child or two who need that hope as well. 

I will be that hope. Every step in my life has led me to this moment. The moment when my husband held me in his arms and let me say no. "I'm all done. It's time to stop." 

It's ok to say no. It's ok not to take the next step. If your body is telling you, no more, it's ok to listen. 

Ok...that's a pretty big statement, and I know a lot of you are going to say, "Who the @#%! does she think she is?! My pain is off the charts!" but hear me out. Pain truly sucks, and to be honest, infertility comes in a close second to pain as one of the suckiest parts of having this disease. I'm thinking of something that is less tangible, something that we all face while living with a chronic illness, and something that can oftentimes go hand in hand as the hardest thing for others to understand. 

Dependability. 

"Whoa, we got a unique thought here!" you might say to yourself sarcastically, but seriously. I've been living with this disease for 16 years, and have had more episodes of pain in my life than I could possibly recall (not that I'd want to). Living my life today, Wednesday, November 5th, 2014, that episode of excruciating pain that first landed me in the hospital nine years ago (though permanently etched in my brain because a super hot EMT (sorry, Jimmy) had to look at my *ahem* sick *ahem* in the bathroom before lifting my only-wearing-a-tshirt butt off the hall floor (while my cat was climbing all over paralyzed-by-pain me) doesn't necessarily have a lot of significance. Sure, it's an important incident to mention to doctors, but that cyst and kidney stone are no longer in my body, nor do they throb from time to time. That day is gone, as much as any major day can be. However, my dependability that week is a mark on my record, so to speak. All the days I called out sick, cancelled with friends, didn't show up to a birthday or bridal shower, spent the day hopped up on pain pills and screaming in my bed...those days are remembered by the people I let down. 

"Oh, you shouldn't feel that way! You couldn't help it!" That's easy to say when you understand the disease, or are reading about it in your office while you snack on whatever was in the break room. To all my employers, friends, family members, however, those days mean something: I can't count on Kelsey. She's great...when she's here. Granted, I work my butt off to be the best friend/daughter/wife/cousin/sister-in-law/employee I can be, but however kickass I might be when I do show up, my absence is remembered far more intently. 

I'm lucky enough to have built a flexible career that I love, if not always what I had envisioned for myself, it works. Yesterday, however, when I arrived at work feeling under the weather and talked to the family I nanny for about going home, I felt that unmistakable feeling of disappointment. Unbelievable amounts of understanding, compassion, and friendship, yes...but disappointment. And worst of all, disappointment in the little boy I care for. 

I've had an unforgettable year, health-wise. Three surgeries have equaled nearly nine weeks of missed work, and I am still dealing with the fallout of having gone under general anesthesia three times in six months, as well as two of my digestive organs being removed (ZERO immune system, but that's just my own speculation). Everyone I speak with understands that I've been through hell and back, and that I need special understanding when it comes to showing up for work, etc. That doesn't erase the disappointment when I call in sick or in pain, once again. I admittedly push myself harder than I should, and perhaps I should have taken off more than a month after my last surgery...but I hate this! I hate being sick, I hate staying home, I hate disappointing people, but especially disappointing myself!

In high school, I received an award for dedication to my dance team, which basically meant I showed up for everything. Nowadays, no one's giving me that award. HA! I may feel dedicated, but my body makes sure I take the "me time" I so desperately need, whether I want to or not. It's infuriating to be living in your body, knowing the potential your spirit and mind could achieve if only this infernal body would get its act together and stay healthy for more than a month at a time! This is nothing new. Most everyone who is reading this is nodding their head, maybe whispering, "YES!" under their breath. Unfortunately, that doesn't change things, does it? As much as I identify with you, and you with me, that doesn't change the world and its expectations of using just a few sick days a year, with advance notice. 

I drove my sorry butt home from my failed attempt at going to work with tears in my eyes, frustration bubbling to the surface, and the sad, tiny, defeated part of me taking advantage and shouting, "Just go on disability already! At least short term, quit your job and just stay home!" Then, the far more powerful, prideful part of me shouted back, "Oh shut up! I love my job, I love my kiddos, I love my families, and I don't want to lose momentum!" Admittedly, it would be defeat to stop working and accept that my body can't pull its weight in society. I wanted to change the world, nurture young minds, and proudly answer the question that always comes up when meeting someone for the first time (So, what do you do?) with, "I'm a teacher!" 

But I'm not. 

Right now, anyway. I introduced myself the other night, sitting in a room with other couples hoping to adopt, as a "former teacher." Because I don't teach right now. I nanny. I nanny on a flexible schedule, one that allows me to miss nine weeks of work and grudgingly call out sick when I need to, and one that in all honesty I should probably still hire my own personal backup given the amount of time I've missed this year. While I love my job, I hate that feeling of unfulfilled potential. Not using my masters degree I worked my butt off to achieve. I have lofty plans of being a reading consultant, but as of now, that's not what I'm doing because I haven't had the time to invest into it. 

Dependability. 

Chronic pain is a bitch, but the hardest part, at least for me, is letting people down...myself included.